Living With A Rare Condition
When my mother was 18, she was pregnant with her first child. As if it wasn't hard enough being a teenage mom, my mother's first child was diagnosed with a very rare condition, and that child was me. My name is Sarah and I am living with "Hereditary Angioedema".
Hereditary angioedema (HAE) is a rare disease of the immune system, affecting an estimated 1 in 10,000 people. HAE causes attacks of spontaneous swelling that are often painful and severe. The most common locations of HAE attacks are hands, feet, face, genitals, abdomen, and throat. I expierence HAE attacks at least once a week, or if I'm lucky once every two weeks. HAE attacks last between 2-5 days. HAE attacks are very unpredictible and can happen anywhere at any time. When it is my face, genitals, hands or feet it is extremley uncomfortable, disfiguring, and embarrassing. When it is my abdomen it is severely painful, causes nonstop vomiting, and I always have to be hospitalized for abdomen attacks. Last but not least when it is my throat it is the most dangerous because it can block my breathing. It is an extremely scary and uncomfortable feeling, and I also have to be hospitalized for this attack.
When I was two years old, it was late at night and my mom woke up to me crying. She turned the lights on and found that my face was severely swollen. Doctors could never figure out what was wrong with me until I turned 7 years old and was diagnosed with HAE. I am now 19 years old and living with this condition has been one of the hardest things to experience. When I was 17 years old, my throat got swollen and I completely stopped breathing, and had to be intubated. It was one of the worst feelings and worst experiences ever in my life. Thankfully I survived and got through it.
After all these years you learn to deal with it and accept that you will live with this for the rest of your life, and might as well make the best of it. I tend to handle my attacks very well and try not to make a big deal out of it. I try to act as if I'm okay, but the truth is that every time I have an attack, I feel miserable, not just physically but emotionally as well. It is a very sad and bitter feeling, as there are many things I cannot do, and that I miss out on, because of this condition. I am basically living my life inside a bubble, and I try my best not to have a bitter feeling. But sometimes I think to myself "why me?" I know there are people out there experiencing much worse things than I am, and for that reason I am not a bitter person, and I am still grateful for the life that I have. Although I have had to live most of my life in a bubble, I have still been able to accomplish many things such as graduating high school with my class, starting my first year of college, moving out of my home and living on my own in a new city.
However there is one medication out there that could help prevent all of my attacks and possibly allow me to live a normal pain-free life. This medication is an injection that I would need three times a week. I have tried and tried to get this medication but my insurance wont cover it and I simply cannot afford it. I have not given up on getting this medication, and I have started a new program that will hopefully help me get this medication. It has been over a year now of fighting for this treatment which I still do not have, but I will keep on fighting until I am finally able to receive this medication. I hope by sharing my story people will become more aware of this condition, and also be thankful and grateful for the life that you have because there are people out there who could be experiencing much worse situations.
Hereditary angioedema (HAE) is a rare disease of the immune system, affecting an estimated 1 in 10,000 people. HAE causes attacks of spontaneous swelling that are often painful and severe. The most common locations of HAE attacks are hands, feet, face, genitals, abdomen, and throat. I expierence HAE attacks at least once a week, or if I'm lucky once every two weeks. HAE attacks last between 2-5 days. HAE attacks are very unpredictible and can happen anywhere at any time. When it is my face, genitals, hands or feet it is extremley uncomfortable, disfiguring, and embarrassing. When it is my abdomen it is severely painful, causes nonstop vomiting, and I always have to be hospitalized for abdomen attacks. Last but not least when it is my throat it is the most dangerous because it can block my breathing. It is an extremely scary and uncomfortable feeling, and I also have to be hospitalized for this attack.
When I was two years old, it was late at night and my mom woke up to me crying. She turned the lights on and found that my face was severely swollen. Doctors could never figure out what was wrong with me until I turned 7 years old and was diagnosed with HAE. I am now 19 years old and living with this condition has been one of the hardest things to experience. When I was 17 years old, my throat got swollen and I completely stopped breathing, and had to be intubated. It was one of the worst feelings and worst experiences ever in my life. Thankfully I survived and got through it.
After all these years you learn to deal with it and accept that you will live with this for the rest of your life, and might as well make the best of it. I tend to handle my attacks very well and try not to make a big deal out of it. I try to act as if I'm okay, but the truth is that every time I have an attack, I feel miserable, not just physically but emotionally as well. It is a very sad and bitter feeling, as there are many things I cannot do, and that I miss out on, because of this condition. I am basically living my life inside a bubble, and I try my best not to have a bitter feeling. But sometimes I think to myself "why me?" I know there are people out there experiencing much worse things than I am, and for that reason I am not a bitter person, and I am still grateful for the life that I have. Although I have had to live most of my life in a bubble, I have still been able to accomplish many things such as graduating high school with my class, starting my first year of college, moving out of my home and living on my own in a new city.
However there is one medication out there that could help prevent all of my attacks and possibly allow me to live a normal pain-free life. This medication is an injection that I would need three times a week. I have tried and tried to get this medication but my insurance wont cover it and I simply cannot afford it. I have not given up on getting this medication, and I have started a new program that will hopefully help me get this medication. It has been over a year now of fighting for this treatment which I still do not have, but I will keep on fighting until I am finally able to receive this medication. I hope by sharing my story people will become more aware of this condition, and also be thankful and grateful for the life that you have because there are people out there who could be experiencing much worse situations.